PANDAS Network Newsletter - December 2019
Children Can Heal & MRI Research expands to dozens of more PANDAS children.
Thank YOU
Over the past ten years our community has grown to a worldwide reach. It's unbelievable and together we have saved many lives! Because of your donations, in October we sponsored 3 events (we have no created or sponsored 11 events). 600 parents/physicians attended! (VIDEOS UP end of December or Early January.)

Our goal has always been simple, build community, save lives and get research behind our children with P/P/AE. This year we had the great news that our $60K seed money grant for an experimental MRI pilot study of PANDAS Children, by Dr. Kyle Williams, MGH-Harvard, was successful in showing possible inflammatory processes in the basal ganglia. READ MORE by clicking below . As many of you know, we have donated to Columbia University Genetic Research. They are honing in on Genetic Research and have been looking at important immune markers in PANDAS-PANS children to be published in the near future. And, finally this year we will be donating to an important Georgetown Univ. tonsil and adenoid study. More info coming out soon on that.

Thank you all. Your donations help in many many ways. To read more about our IMPACT over the years you can see that on our PANDA S Network website.
Thank you for all you have done!k
We know so many of you have given already but please consider us Tuesday. EVERY PENNY will go to research. Just know: we gifted $50K last year to the Agalliu Lab at Columbia for genetic research that will continue into 2020; last month $40K approx. was raised by Pie for PANDA S (more info on that next newsletter) - some of that is earmarked for tonsil/adenoid and blood sera research in 2020.


T6 A Beautiful 6 year old HEALS in New York
In February 2018, my 4 1/2 year old daughter, Veronica, woke up one morning, completely “sick.” She changed overnight from a typical child into one whose entire “sense of being” was engulfed with anxiety and fear, food restriction, dysgraphia, brain fog, aggression, sleep disturbances and more. Our home life was turned upside down and we were frightened about this change in her.

I was fortunate, that in a few days I was able to take her to a local New York Adolescent Psychiatrist, Dr Mark Reitman, who mentioned this might be PANDAS. I told him she had strep three months earlier. He looked at her tonsils and advised me to see my pediatrician. I was given antibiotics as we waited for blood tests to come back to see if the blood markers, ASO and D-nase were raised. Over several days on antibiotics she improved to some degree. But there was a mix up in the blood and the pediatrician took her off the antibiotics. She began to regress off the antibiotics.  Dr. Reitman had to review the blood and re-instate antibiotics and she improved again—but not entirely. I was so relieved that the worst of the episode seemed to be over.

I Googled PANDAS and looked at the NIMH and Pandas Physicians Network websites that both advised parents to contact PANDAS Network. I read about the Cunningham Panel and talked to volunteers.  I wondered why, although less severe, my daughter still had dysgraphia, her hands shook, she had brain fog, she had a poor memory, her elementary school said she needed special assistance.

Her Cunningham Panel showed very high numbers and seemed to explain in part why brain fog, mood issues and hand trembling was continuing. I found Dr. Susan Schulman, a great pediatrician who has worked on PANDAS cases for decades. We decided based on our family history of strep and frequent rate of infection to do a tonsil and adenoid surgery. Veronica quickly improved. Then, we used IVIG because her cognitive abilities were not improving-- memory, focus, alphabet recall, and communication was poor and more issues. After IVIG, my daughter had an uptick in mood issues and it was hard on her and our family. But over a three months it all calmed down. 

To manage through the healing time, I called PANDAS Network volunteers frequently and attended the Autoimmune Enceph, Post-Strep Conference in Arlington, VA. There were 200 new parents there with me and it helped me feel not so alone with this scary illness. I want to advocate for better awareness, more acceptance of this illness. I was lucky I got help fast. I know others are not so fortunate.

Now my 6 year old Veronica is back to baseline and doing great!!!! I am grateful and hope this story helps other to NEVER GIVE UP! Kerry L.

Dedicated to improving the diagnosis and treatment of children with PANDAS and PANS